Torticollis

[Dawn]

I wanted to know if anyone's little ones ever had this? It's called Torticollis, which is a twisted or turned neck w/ the inability to straighten it. If so, did physical therapy remedy it, or was it something more? Based on research they say usually it's a symptom of another disorder.

I'm asking because one of my sister's sons may have this. he's getting checked out next Monday (24th), and they don't know what to expect. There are different diagnoses to torticollis, and she says worse case scenario it could be CP, but they really have no idea.

I just wanted to hear from other pple who know about this, and if you've had experience with it...how the outcome was and if it was something more. I'm doing this research for myself, so I can learn about it more as we're getting a little worried.

Thanks so much.....

[Lette]

Dawn... I'm pretty sure Shannon's son had this. She was in my July-Dec 2003 playgroup and she's the one that makes overalls.

[Dennis]

Joe had it when he was a baby. It was a minor case, though. He had some PT and we did some basic things, like holding him on the other side for feedings so he turned his head the other and stuff like that. He was fine after a few months.

Dennis

[Lette]

Here's one of her posts about it from 2004

http://www.onceuponalife.com/forums/showthread.php?t=5104

She hasn't changed her username for the halloween thing, so it'd be easy to PM her and ask about it. username: Shannon

[Dawn]

Dennis....thanks for sharing. :) We, too, are all hoping it's a mild case that can be taken care of with PT. But with his disposition of being EXTREMELY laid back & calm is now creating more questions to ponder, even though it can still just be his character and how he is.

Lette - thank you, thank you! I will certainly PM Shannon, for sure. I have learned alot more from reading that thread. I will see how her son has been doing.

[Brandi]

Dawn - I don't know much about it at all. I really hope that your little nephew will be perfectly fine. Good luck and let us know what happens!

[Dawn]

Dawn - I don't know much about it at all. I really hope that your little nephew will be perfectly fine. Good luck and let us know what happens!
Thanks Brandi. :) I will certainly keep you all posted.....

[Cami]

Dawn,

Aubrey had torticollis from the time she was born. Looking back at pictures of her as an infant, I can really see how her neck was uneven, like she was always holding her head to one side. It caused her head to be flatter on one side too. I first asked the doctor about it when she was maybe 1 or 2 months old. I remember reading the research on it too and being very nervous. But it was simply torticollis and PT took care of it. She went, at first, once a week, then every other, then once a month, from age 3 months to 1 year or so. We did stretching exercises with her at home too (which she hated). She's 2 1/2 now and is totally fine.

Hopefully it will be something as uncomplicated as this with your nephew!

Cami

[Bev]

I hope everything works out. :)

[Dawn]

Cami, thanks so much for your story about Aubrey. So glad to know that things are ok now! :) I will pass along the info. to my sister via email..... as I'm sure she needs to hear a story like that, right now. My sister said that one side of his head is extremely FLAT (right side) and the other side is bulbous shaped.

Bev...thanks. :)

[Shannon]

Hey Dawn :) I got your PM...If your sister wants to PM me then just let me know. Is it the one I made overalls for?

I dont have a bunch of time to post right this second, but I can give you tons of info.

[Dawn]

Hey Dawn :) I got your PM...If your sister wants to PM me then just let me know. Is it the one I made overalls for?

I dont have a bunch of time to post right this second, but I can give you tons of info.
Hey! Glad you got my PM. :) Yes, this is for my sister that you made the Thomas overalls for her older son.

She's not a member here, so she can't PM you. You can either PM me back and I will email her that info. or I can give you her email address. Thanks. :)

[Shel]

Dawn, do you remember Annie? Her daughter Nichole had a pretty bad case of it, but straightened out with PT. I can email her and ask if she wouldn't mind emailing your sister

[Hannabanana]

Hanna was diagnosed at about one month old & we immediately started PT. On a monthly basis we would see a therapist & have Hanna assessed and were shown how we could help with the therapy at home ... like everyone else has mentioned, we held her differently, laid her on her side for naps, used towels in the car seat to keep her head straight while in there...so many things that weren't that difficult to do. I think that we went for about 7 months and in the earlier pictures, you can totally see her neck angle and now, she's totally fine ... mind you, I think that I see a slight difference in her eyes and that might be a lasting situation but it's minor IMO. :)

[Dawn]

Dawn, do you remember Annie? Her daughter Nichole had a pretty bad case of it, but straightened out with PT. I can email her and ask if she wouldn't mind emailing your sister
Hmn, that name sounds familiar. :scratch: Sure, you can email her...that would be great. Thanks. :)

[Dawn]

Hanna was diagnosed at about one month old & we immediately started PT. On a monthly basis we would see a therapist & have Hanna assessed and were shown how we could help with the therapy at home ... like everyone else has mentioned, we held her differently, laid her on her side for naps, used towels in the car seat to keep her head straight while in there...so many things that weren't that difficult to do. I think that we went for about 7 months and in the earlier pictures, you can totally see her neck angle and now, she's totally fine ... mind you, I think that I see a slight difference in her eyes and that might be a lasting situation but it's minor IMO. :)
Aimee, thank you. I will send this info to my sister as well. I think one of the reasons she's scared is because nothing was done until now. They were always worried she said, but the dr. said to wait until he gets more mobile, etc. and see from there. Well, he's mobile...crawling, etc. and his neck is still like that. Thankfully he has an apt. on Mon. so we'll see what's up.

[Cami]

Dawn~ I think one reason they say that is because it does make a difference. After the baby gets more mobile, he spends less time with his head flat against something and he moves his head around more on his own. I saw that with Aubrey, that her improvement accelerated when she started crawling and sitting up. (I even started to write that in my first post) But regardless, your sister will be taught exercises that she can do with him at any age, and it certainly can't hurt.. the more you do them, the better.

Cami

They were always worried she said, but the dr. said to wait until he gets more mobile, etc. and see from there. Well, he's mobile...crawling, etc. and his neck is still like that. Thankfully he has an apt. on Mon. so we'll see what's up.

[Hannabanana]

Something else I just remembered -- we would even sit in at the table a certain way so that she couldn't favour her weak side ... and I agree with what Cami said ... the more active a child gets, it could self correct.
Just a question for everyone here, I was told that the problem was in the womb ... the way the baby was positioned ... does that sound like something that you've heard? I always questioned this.

[Cami]

They told me that anything was possible but didn't specifically give me an explanation. With Aubrey, she was practically sideways in my uterus.... I could feel her inside me like that... like she was laying cross-wise. It was really hard to deliver her because her head did not go into the birth canal in the correct position. So yes, in her case, her position in the womb had a lot to do with it.

But I have heard in other cases that it wasn't until after the birth when the baby kept favoring one side and it developed over time.

Cami


Just a question for everyone here, I was told that the problem was in the womb ... the way the baby was positioned ... does that sound like something that you've heard? I always questioned this.

[Dawn]

I just wanted to give an update, about Eric my nephew. I got this email from my sister which I'll post here. Also, at the end she has a couple questions that maybe some of you girls can answer. Thanks. :)


Update from this Monday...

Thank you for your prayers. Eric does in fact have torticollis. It is not severe so which is good. We will have physical therapy at the hospital 1X a week and do therapy at home with him. There should be progress in a few weeks, if not then they may have to increase the therapy to 3X's a week.

The therapist feels he got this condition while in the womb, he has good asymmetrical movement. I never put 2 and 2 together why I find him "falling" over in the sitting, standing position constantly. I thought he was clutsy like me. :) Now I know why when he looks to the right he falls over b/c his torso and back needs to compensate for his immobile and weak neck muscles on that side. He also looks like a typewriter when he looks that way and only can hold that position for a couple of seconds then he immediately turns his head the other way.

Eric's shoulder ( trapezius) is also affected, it is slightly higher and raises to a degree when he turns that way. WE have to be careful that the PT helps b/c Scolios and web neck can occur with as the bones develop with the muscles being extremely weak on the one side.

The one factor that may be against him is usually infants with this condition start therapy within the 1st couple of months of birth. Being that he is going on 9 mos, it may take longer. The other thing is his lobes closed in the back of his head so you can "reshape" that part with a helmet, but with the top lobes they don't close until about a year, so there is hope there.

So far it does not look congenital. The way only know with time and that is when surgery may have to come into play. As for his shape head he may need to wear a helmet. We will have to go to a pedia ortho Dr. for a consult to see if they in fact recommend him wearing one. He would have to get fitted and sized for one.

Both conditions go hand in hand. I feel a sense of relief that there is nothing "more" to his condition. It will be a lot of work to get his muscles strengthened, in the long run at least he is getting the therapy now for it.

Dawn thanks a BILLION for sending me those posts! What is the update and prognosis, it seemed like PT worked mostly. What is the average time spent in PT or does it depend?